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Co-developing research with parents, researchers, and healthcare professionals: Creating a measure of parent experience with family-centered care in the Neonatal Intensive Care Unit Passed

Wednesday May 15, 2024 15:27 - 15:33 G2

Moderator: Emmelie Barenfeld
Presenter: Jacqueline Wilson

Track: Co-creation

Background: The hospitalization of an infant within the complex environment of the Neonatal Intensive Care Unit (NICU) is incredibly stressful for families. Family-centered care (FCC) principles that integrate families into their parental role by forming relationships, sharing information, and supporting knowledge and skills are integral to NICU infant and parental health outcomes. Parents from a maternal-child health Parent Advisory Group in Alberta, Canada identified the need to evaluate parents’ experiences with FCC in the NICU. However, reliable tools developed with contribution from stakeholders to evaluate parent experiences are lacking, despite the importance of FCC in NICUs. Objective: This in-progress research responds to the parents’ call-to-action, with the objective to co-develop and validate an instrument to evaluate parents’ experiences with FCC in the NICU. The Neonatal Intensive Care Experience Reporting (NICER) Instrument is being co-developed by a team of five parents, three researchers, and three healthcare professionals. Methods: The NICER Instrument co-development includes four phases. Phase 1 (complete): defining NICU-specific FCC principles to underpin instrument co-development. Phase 2 (in-progress): selecting items and validating content with parent, researcher, and healthcare professional advisory groups. Phase 3: pilot-testing the instrument amongst 30 NICU parents. Phase 4: assessing instrument reliability and validity across 300 NICU parents. Results and Implications: This co-developed research highlights how healthcare system gaps can be identified by patients and families, and how solutions can be addressed by collaborative teams of knowledge users embedded within a healthcare system.  Throughout this research, the co-development team has gained practical knowledge to share related to (1) stakeholder engagement and network development; (2) working effectively with diverse knowledge users; and (3) the impact of patient and family input. Our takeaways from the co-development process highlight the importance of combining parent’s experience, researcher’s expertise, and healthcare professional’s knowledge to strengthen the content and relevance of FCC evaluation. 

Language

English

Seminar type

Pre-recorded + On-site

Lecture type

Orals

Conference

GCPCC

Authors

Jacqueline Wilson, Karen Benzies, Deborah McNeil, Maria Santana, Seija Kromm, Neonatal Intensive Care Experience Reporting (NICER) Instrument Co-design Team

Lecturers

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Emmelie Barenfeld Moderator

Researcher, Reg. OT
University of Gothenburg

I am employed as a lecturer at the occupational therapy program at University of Gothenburg. I work in various research projects affiliated to the Center for Person-Centred Care (GPCC), as well as in projects affiliated to the Center for Aging and Health (AgeCap).

Research area:
My focus as a researcher lies on how the transition to a more person-centred care can be supported through various interventions. I apply an occupational science perspective in the research. Ongoing research projects evaluate person-centered interventions from a patient perspective as well as educational interventions to support the implementation of person-centered approaches among staff and managers/leaders. The research projects are conducted in different contexts and in collaboration with patients, staff and leaders.

Profile image for Jacqueline Wilson

Jacqueline Wilson Presenter

PhD Candidate
University of Calgary

Jacqueline Wilson (RN, BN) is a PhD Candidate in the Faculty of Nursing at the University of Calgary. Clinical experiences locally and abroad have fuelled Jacqueline's interest in exploring patient and family engagement in health services research, decisions, and evaluation.

Jacqueline's research addresses a call-to-action by Alberta parents and involves co-developing a patient-reported experience measure to examine parents' experiences with family-centred care in the Neonatal Intensive Care Unit. The instrument is being co-developed by a research team of parents, researchers, and healthcare professionals.

As an aspiring nurse clinician-scientist, Jacqueline hopes to establish a research program that exemplifies how health system gaps and solutions can be identified and addressed by research teams co-led by patient and family partners.